1. < Hypertrophic Cardiomyopathy (HCM)
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Has anyone had surgery for Apical Hypertrophic Cardiomyopathy

Posted by dbrima @dbrima, Jun 4, 2024

Has anyone had surgery for Apical Hypertrophic Cardiomyopathy?

I am 34. I was on camzyos for a year. It didn’t work for me. Then last year I had a septal myectomy. I was ok for awhile but now my gradient is back up to 50. Supposedly, I still have thickness in the lower, more narrow part of the left ventricle. Doctors in Houston do not want to operate on me. They said it is too difficult to work in that area. My doctor is reaching out to the Mayo Clinic because they have done it for the past 10 years. Does anyone know of this procedure or have you had it performed?

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judpuds | @judpuds | Oct 10 11:18pm
In reply to @walkinggirl "@judpuds @katiekins I am sorry that the promising Camzyos did not/is not work(ing) for you. My..." + (show)
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@judpuds @katiekins I am sorry that the promising Camzyos did not/is not work(ing) for you. My cardiologist said and those who have contributed to the discussions on Connect have reported 3 possible outcomes: it's a miracle drug, it does nothing/side effects or it works for a while and then does not work. Reasons? No one seems to know at this point. I have a theory, but we stay away from speculation without supporting facts here on Connect.

@judpuds when you had your echo, were the results favorable? Has your cardiologist suggested that your body (those chemical factories we live in) may eventually adjust? Bisoporol is a beta blocker blood pressure drug while Camzyos is supposed to act on the thickness of the heart wall.

Have your doctors mentioned Myquorzo? Please try to get their opinions about trying that newer drug which is still under study.

I have no experience with either of these drugs, I had a septal myectomy at Mayo in July 2022, Camzyos was still in trial. I was 3 weeks shy of my 76th birthday and not for one single second have I ever regretted taking that step. Please keep in mind that your cardiologists may suggest other options, please also be sure that your care is provided at a COE or from a cardiologist very knowledgeable about HCM.

What are the next steps for you, @judpuds and @katiekins? When are your next appointments?

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@walkinggirl I just had my second echocardiogram. I did not meet with my cardiologist on till after the third echo. He is an HCM specialist. I was referred to him by my first cardiologist..
he said he thought I would do very well in this drug. Er shall see, after ( more weeks.

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annieobee | @annieobee | Oct 11 11:32pm
In reply to @walkinggirl "@annieobee "I am fortunate with contacts" ((HUG)) I am very relieved that your hubby is in..." + (show)
Profile picture for Linda, Volunteer Mentor @walkinggirl

@annieobee "I am fortunate with contacts" ((HUG)) I am very relieved that your hubby is in a supporting role, he is a professional in the heart field; that is to your huge advantage. Both you and your husband may know more about your medical situation because of your contacts. It would not surprise me if the medical people caring for you are consulting with colleagues, perhaps around the world, about your needs. You may choose to ask questions and become a participant in determining your own care. What kind of care are other patients with AHCM receiving? What is the next step in your care at this time? No, indeed, you are not alone!

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@walkinggirl . I know , boy am I fortunate . Plus I did cardiac research with another of cardiologists . So phewww I for sure know I am fortunate .
Thank you for welcoming me . I feel less alone .

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